Over the last few weeks we've settled into a state of normalcy with Jesse. His nystagmus no longer consumes our every waking thought and most days we don't even think about it. He's just our sweet little Jesse who is probably the happiest baby ever. Seriously, this kid is so happy.
Well, last week it came time for us to focus on the eyes again. A few weeks back we were fortunate enough to get an appointment with Dr. Lingua and it was now time for us to make the trek down to LA see him.
Our appointment was set for the Wednesday before Thanksgiving and we were very grateful to be able to get in to see him with only a few weeks notice, especially since he only operates on kids over 2 yrs and Jesse is only 6 months. His assistant, Susan, is wonderful and so understanding.
Also while we were there, another family from one of my FB groups (American Nystagmus Network) happened to also be visiting with their daughter to get this very procedure done. Her little daughter was having her fourth eye surgery and we happen to have our appointment at the same time as their follow up. I cannot thank them enough for talking to us and sharing stories like we were life long friends. Understanding what they went though gave us so much insight into what we may encounter someday with Jesse.
Our appointment with Dr. Lingua was fairly short, but gave us confirmation on what we had all thought but could never say for sure, and that is that the 'hardware' that makes up Jesse's eyes looks great. Optic nerve, fundus and retina all look good and he has no refractive error. Dr. Lingua agreed with our opinion not to get an MRI at this time and he did not detect any optical albinism. If it weren't for the movement he would probably have great vision and even with the movement his vision probably won't be that bad. Which we can already tell with how active Jesse is.
Though a short visit, we were glad to have someone who is so highly regarded look at Jesse's eyes and we will probably still follow through with our plans to see Dr. Hertle sometime in the new year. Though Jesse may have surgery someday, it will most likely be to dampen the movement to help him in social settings more than anything. And though we aren't out of the woods yet, we are really so grateful to hear that his vision looks decent and to watch his development progress each day.
Speaking of development, make the jump HERE to read all about our trip to LA and the recent milestones that Jesse and Max are hitting.
For Part VII click here: A trip to see Dr. Hertle
and HERE to start from the beginning.
Monday, November 16, 2015
Last tuesday we visited San Francisco Audiology to have Jesse's hearing checked. We didn't really notice any issues at home, but our daycare teachers mentioned that he doesn't respond to his name like the other kids do. We figured this was either because he doesn't care (like his brother), or because he can't see far enough to make it worth picking up his head to look.
Either way, we knew if there was any concern we had to get it checked out, so I made an appointment with a pediatric audiologist in SF, Dr. Dobbs.
Dr. Dobbs was great. He took us in right away and was great with Jesse. First we did a few inner ear tests to confirm a lack of fluid in the middle ear. Both tests went great and gave us confidence there wasn't fluid in the lungs or an inner ear infection.
Next he left the room and would speak to Jesse through a set of speakers, either left or right, to see if he could get a reaction from him. We knew this test would be difficult because Jesse is only 6 months old, but Dr. Dobbs was very patient and even took a break in the middle of testing to give Jesse a chance to 'reset.'
Though he didn't react to all the sounds, we do know that he would react when Dr. Dobbs spoke at any volume, but he didn't seem to care about the beeps or sounds. At this point it is hard to say if that's because of a hearing issue at those frequencies or because he's a 6 month old who doesn't care. We will go back in January to revaluate, but this was a great start and gave us a lot of reassurance.
After taking some time to have a nice lunch out in the city, we headed back home to catch Jesse's second appointment of the day. Today Jesse was meeting Nicole and another lady from the Regional Center, Early Start program.
A few weeks ago we'd had Jesse evaluated with some ladies from the school district, but they specifically focus on his vision and not overall development.
The ladies from the Regional Center focused on Jesse's development and ran through a series of activities to gauge his level.
Some activities involved finding a cheerio on a placemat, picking up red blocks with both hands, passing blocks from hand to hand, anticipating being pulled up when laying face up and the arms are pulled, shaking a little bell, and a few others.
Well, Jesse did great and he doesn't qualify for services! Woo hoo, good job Jesse! (In order to qualify you have to be at least 33% deficient in one area of development). While I haven't read the full report yet, the lady told me that he's passing all his 24 week milestones and he's even meeting some of the 28 week ones. And while we are ecstatic that he is being denied services, we will have him reevaluated in about 6 months to make sure he doesn't develop a need for them in the future.
So we are now feeling more confident in Jesse's development which means we've been able to spend the last week or two just relaxing and moving into a "normal" schedule of raising two little boys! Ha!
Next wednesday is a meeting with Dr. Lingua so stay tuned to see how that full battery of tests go.
Part VII: A trip to see Dr. Lingua
Posted by Shelley at 11:02 PM